Tomorrow I am going on a writing retreat; this week I have been taking advantage of friend’s being away who have kindly allowed me to work in their houses during their absence. For some reason I just can’t focus whilst at home there are just too many distractions; anything from tedious domesticity to the pull of on-line time-wasting – and yes this is a lack of discipline on my part I confess; practically a character flaw! So having set myself an end of June deadline I am going to deliberately isolate myself for seven whole days to immerse myself in reflecting on how Cruella has impacted on my life; already it’s proving a greater emotional challenge than I, perhaps naively, imagined. But all I can say is there is no wonder I find myself in a perpetual state of exhaustion! She really has got a grip on my every waking moment and that’s before you factor in the hamster wheel of pointless time-wasting appointments that require more than a degree of patience to hang on to ones sanity albeit by a gossamer thin thread at times!

This week has had a dental focus beginning with a root extraction on Monday; as it happens the actual procedure wasn’t too bad. But the hour before waiting tried my patience unfairly as it happened. I had thought I had to go 15 minutes early for X-rays but not it was actually an hour; of course there was no queue in x-ray on the day I attended. It was only when, a little annoyed at 335 (having arrived at 245), I asked the receptionist how much longer I would have to wait and she duly went off to enquire only to return saying it won’t be much longer but your appointment isn’t until 345. Whipping my letter out I confidently said ‘no it was 3pm’; and I looked at the hand amended time I saw it was indeed 345! I apologised immediately but still seething; a patient’s time, it seems, is an open-ended resource to be squandered by the NHS at will. I know the treatment is free from the Dental Hospital but the reason all my teeth are crumbling is as a direct side effect of the Fentanyl lozenges prescribed for the chronic pain; so how come this is my fault and I am expected to politely comply?

The only plus of spending so much time in clinic waiting rooms is the opportunity for people watching; not the fellow patients although they can be worth a casual glance, no I mean the staff running the clinics. The borderline between the personal and the professional (in terms of behaviour and conversation) is invariably blurred; I can practically see relationships blossom and decline when attending the same clinics over a prolonged period. Actually that’s seldom true as the turnover of staff seems to be rather high in the hospitals I frequent; but there is some statistic about the number of people who meet their significant others at work so I guess none of this should surprise me. I’d just prefer not to have colleagues flirting over my practically prone body; the individual most guilty of this had taken annual leave apparently missing my appointment. And he only works every other week in the Restorative Dentistry clinic so as my case is assigned to him the very pleasant young Irish woman who tended to me chops could only fill in a couple of huge holes and send me to have 3 more teeth extracted!

The Consultant in charge had fractured his arm so he wasn’t there to offer an opinion; again he’s very pleasant but has begun to talk about me going back to my own Dentist now he’s found out that the ‘unusual pattern of decay’ wasn’t new and his initial puppy dog excitement about writing an article had cold water over it; bloody Yanks (I think he found references in an American dental publication). The problem will going back to my old dentist is in a nutshell is has happily offloaded me and the deal cemented when the Consultant wrote a letter saying he would treat me but in his opinion this was something he should be doing! It’s all very well Consultants in Teaching Hospitals taking the moral high ground but it does rather ‘piss on my dental chips’; funnily I am reluctant to go to receive treatment involving ALOT of pain and it involves needles in my mouth! Why does the phrases male ego float through my head – alpha male behaviour can be safely metered out in writing when the particular ‘gentleman’ in question are not exactly macho! In fact both of them surround themselves with dental nurses with more balls than can be found in their possession.

Summing up the lovely Irish dental said basically the teeth at the sides couldn’t be saved but looking on the positive side the front teeth are strong and clean! ‘I know that’s what would worry me in your situation’ and she’s right I guess; a toothless grin would frankly upset me quite a lot! Funnily I was telling me swimming mate the sorry story and she showed me that she doesn’t have any teeth down the sides of either jaw; apparently when she was a child her dentist had removed them all in the belief that they were her milk teeth! I must find a discrete way of seeing how she eats as at this point I can’t visualise anything other than a rabbit nibble with me front dentition. There must be something we can celebrate with cake or a biscuit…

On a more serious sober matter I listened with growing irritation at the reports across the news channels about the changing face of a cancer diagnosis; the C word is no longer synonymous with a death sentence. Earlier screening and intervention coupled with medical advantages in terms of drug treatment mean many lives are saved. Don’t get me wrong this is absolutely good news for millions of families across the globe but for me the C word means something quite different. Chronic (and incurable) diagnoses mean a life sentence rather than a death sentence. And yes I am going to be controversial so brace yourselves (and ponder what I’m about to say before exploding).

Having been diagnosed with a chronic long-term incurable illness seven or so years ago had I been given a choice between a chronic and a terminal illness knowing what I know now I would have chosen a terminal illness without drawing breath. Why so? Well my diagnosis is uncertain, there may be treatments to manage or modify the disease course but there is no cure; there is no resolution. Without warning my ability to lead a relatively independent life could be taken from me over night. The impact is far-reaching; it’s not just me that lives with the uncertainty it is my family and friends. Believe me a terminal diagnosis has some (comparative) advantages: not matter how hideous the illness you know it will end, you can plan your future albeit a shortened one; people can adapt to your forthcoming absence (even if this means some people walk away because they can’t cope) and you can get your head around it because there is that degree of certainty.

The problem is that a chronic illness just goes on and on; people’s patience and interest wanes (understandably), let’s face it watching someone you love dissolve before your very eyes is emotionally wearing and ultimately the NHS is good in a crisis but it doesn’t pay so much attention to chronic conditions. So having got that off my chest I can focus on getting on with the rest of my life; that’s the deal you don’t really have much choice – a single Spinster who chooses to live alone independently because this keeps her sane! Someone recently observed, in the context of pregnancy, that as a woman it doesn’t matter how much support you have ultimately you are on your own; having a chronic incurable condition is just like that.

In summary I wanted to put another (very personal) perspective on the C word; of course the improvements in cancer care are wonderful and I wouldn’t want to be seen as dismissing these achievements. Investment in cancer treatment has made a huge difference; cancer is a sound disease to invest in because the patient can be cured and because the patient can get cancer again. If I had money to invest I too would invest in cancer; corporations and individuals make choices that is just life, besides the potential human impact of this investment is huge.

To quote Marge Piercy ‘There is no virtue in survival only luck and a streak of indifference that could take off and keep going’. So I will throw myself into my writing retreat with focus and resolve; with any luck I will achieve something – I either will or I won’t depending in part how Cruella chooses to behave!!